The Occupational Therapist and Huntington’s Disease
Clare Cook MSc, Dip COT
Session Outline• Introduction to occupational therapy in HD• Development of practice guidelines• Research
“The basic goals of occupational therapy intervention for persons with dementing illnesses are (a) to maintain, restore or improve functional capacity; (b) to promote participation in activities that optimise physical and mental health; and (c) to ease caregiving activities.”
(American OT association,1994)
Where to find an OT• Health and social care departments• Wheelchair services• Neurology clinics• Inpatient units (mental health/physical health)• Specialist teams• Community mental health teams• Palliative care teams
Why Have an OT in the Team?
• Trained in both mental health and physical health
• OTs specialise in occupational performance• Maintaining skills and independence
Interventions
Vary according to:1.Particular difficulties experienced by the
service user2.Which activities are meaningful and
purposeful to the individual3.Social support4.Resources available
Strategies
• Compensatory• Environmental• Cognitive/behavioural (care givers)• Case management/care coordination
Where’s the evidence?
Systematic Literature Review• Medline • Embase• Cinahl • Amed • PsychInfo • Cochrane library • Internet search (Google scholar)
Search Terms• Huntington’s disease, AND • Occupational therapy / occupation /
independence / rehabilitation / activities of daily living / adaptations / home adaptation / equipment / leisure / work / employment / feeding / posture / seating / wheelchairs / splinting / sensory / multi-sensory / manual handling.
Findings • 10 Articles• No RCTs• Pilot studies• Case studies
Effectiveness of physiotherapy, occupational therapy and speech pathology for people with Huntington’s disease: A systematic review(Bilney et al 2003)
• 3 articles on OT ’71,’81, ’91, no RCTs• Small numbers of participants• All in latter stages of disease in nursing
homes• Showed no improvement in function but
unable to show if deterioration had been prevented
• Need for further research
Community based OT for patients with dementia and their caregivers: randomised controlled trial. (Graff et al 2006)
• 135 participants• 10 sessions of OT over 5 weeks compared
to a control group of no OT• Outcome measures – AMPS, IDDD,SCQ• Significant improvement in scores which
remained significant after 3 months
“occupational therapy will result in less dependence on social and healthcare resources and less need for institutionalisation” (Graff et al 2006)
Guidelines
Part 1
• Process of developing the guide
• Background Information
End of life care24 hour postural managementManual handling and minimizing riskAlternative living arrangements
Optimising activitiesMobility and falls preventionTransfers and hoistingBed mobility and sleep safetyPostural managementEating & drinkingSelf careDomestic skillsFatigue
Supporting ParticipationSelf EfficacyRoles & relationshipsWorkSocial Recreational and Leisure activitiesDrivingCommunity living skills and Outdoor mobility
Strategies… Physical FactorsCognitive FactorsBehavioural Factors
Part 2
Current Challenges• Evidencing statements• Ratification• Publication
Need for more research into Huntington's disease and
occupational therapy
A Study to validate the Assessment of Motor and
Process Skills (AMPS) for use with people who have Huntington’s disease
The Assessment of Motor and Process Skills (AMPS)
• An observational assessment• Used to measure the quality of ADL
performance• Standardized on over 100,000 clients
worldwide
An AMPS Assessment
• Begins with an interview to determine the tasks that are familiar and relevant to the client
• There are 85 standardized AMPS tasks, ranging from easy to hard
• Includes the observation of at least two chosen ADL tasks
Research Study• Test/retest• Participant vs. control• Relationship with similar scales
Hypotheses• AMPS is a valid assessment to use with people
who have HD• AMPS is a sensitive measure which can detect
change in performance skills• AMPS could potentially be used to assess the
impact of disease modifying drugs on a person’s ADL performance skills